therapy

All posts tagged therapy

Twenty-some-odd years ago in a universe far, far away, I was a college graduate in search of direction. Despite the results from personality tests saying I should be a teacher, writer, therapist, or nun, I had become a medical laboratory technologist… and I was pretty miserable. I knew I enjoyed writing, so when I saw an ad for a writers’ workshop taking place in a picturesque, well-to-do town about an hour and a half from my apartment, I signed up.

Given the pricey registration fee, gorgeous location, and size of the attending crowd, I’m guessing a big-name author was giving the keynote lecture that day. I’m embarrassed to say, however, that I really had no idea who the author was at the time and did not bother to file her name away in my memory banks so that one day I could pull out that famous author’s name while writing a blog post and brag about the time I saw her speak at a fancy writers’ conference I attended many, many years before I was thrust into an alternate universe where I decided to become a writer.

I do remember SOME details about the conference, though: I remember sitting across the table from a guy who told us he had arrived late at the hotel the night before and who promptly nodded off as soon as the speaker began. I remember buying an original, limited edition print of a cat painted by a local artist (because I like cats and back then I had money with which to buy cat paintings). And I remember answering one specific question presented by a speaker in a breakaway discussion session that afternoon.

The question was: “What do you want to write about?”

Right away it became clear that the other attendees had given this a lot more thought than I had. As they went around the room, each aspiring writer gave a synopsis of what they hoped would be the next great American novel.

But what kind of story did I want to write?

As a kid, my imagination had been captured by fantasy and science fiction, by monsters and space travel, by heroes that defeat the bad guys and save the day. Naturally I assumed that someday I would write an exciting adventure like that. It would be about an ordinary person who becomes a hero after going on a quest and overcoming countless challenges. There would be a journey and companions, maybe space or time travel, probably some magic, and definitely dragons.

But then again, not all the stories I loved were fantastical or futuristic. “To Kill a Mockingbird” was my favorite book in high school, and although I didn’t read the book, I loved the movie “Fried Green Tomatoes”. Something about those characters, those stories – they made me FEEL something. They made me THINK. They were stories about people’s inner workings and motivations, about connections and insights, about everyday heroism and the deep impact one life can have on another.

The question had made its way around the table, and now it was my turn to answer it. I nervously fumbled for my words, which sometimes came easier on paper than aloud. “I guess I want to write a story about people. You know… about what makes them tick.”

All eyes were on me, waiting expectantly for elaboration. Some people smiled and nodded politely.

“Like ‘Fried Green Tomatoes’,” I added awkwardly. I decided to leave out the part about dragons and magic.

So here I am now, writing a memoir, of all things. It may not be the exciting adventure I thought it would be, and it’s nothing like “Fried Green Tomatoes”, but it’s funny to think how close my story really is to my original ideas.

I’ve taken a “journey” through space and time to an “alternate reality”, been accompanied by old companions and met new ones, been counseled by wise mentors, battled inner demons, and explored what makes my son tick. I’ve even experienced some magic along the way.

But wait! What about the dragons?

Well, My Friends, let me tell you about the dragons my husband and I have encountered. They’re metaphorical, of course, and a lot friendlier than the fire-breathing variety in fantasy stories. Yet they are just as crafty, and they still guard the same thing as traditional dragons of old…

Money.

Now before I get into the action-sequences of our dragon battles, it is important that I explain how it came to be that my husband and I found ourselves in need of money guarded by metaphorical dragons.

One therapy that has worked best in school for our autistic son is ABA therapy (Applied Behavioral Analysis). The improvements he has made in behavior, independence, feeding, and his overall ability to learn, have all been based on the ABA model. We know it works, and we desperately need in-home ABA for him.

For many years, insurance companies have refused to cover ABA therapy. However, the state I live in passed a law mandating that all insurance companies must cover ABA therapy for patients with autism. Despite this mandate, every time we tried to get coverage for in-home ABA therapy our insurance company denied our claim. So my husband and I suited up in our battle armor, grabbed our swords, and started making phone calls.

“Ha! The law says you MUST cover ABA!” We confidently declared, taking a few warning swipes at our would-be foe with our figurative swords.

They were unimpressed by our display of strength, and for good reason. “This insurance company covers ABA; your plan through your employer does not.”

Hmm…this first dragon had not very forthcoming with information up to this point, which was why we had attempted to file claims repeatedly before the real issue was revealed: We had been chasing the wrong dragon.

A bit singed but still determined, my husband approached his employer. Turns out, employers who choose what’s called a “self-funded” program are NOT required to follow the mandate. A loophole had trumped our power play. Without the law to wield, my husband enlisted the aid of a strong ally at the Office of the Healthcare Advocate who helped draft an appeal with hopes of convincing his employer to either fund ABA or provide an exemption for our son. Again, we were denied.

At this point in our quest our armor was definitely dented, and we were feeling scorched and burned. So we did what most heroes do when the stakes are down – we went in search of answers from those who had traveled this road before. The sage advice from these oracle-like advisors was often cryptic and given with a wink: “The squeaky wheel gets the oil!” But sometimes we were given a specific task: “Call this agency – there you will find the information you seek.”

They instructed us to stress our son’s behaviors and our concerns for his safety, NOT his autism, when speaking with those who stood guard over funds. We also learned through trial and error that some dragons required the correct passwords in order to move forward. For example, you don’t say, “We need ABA therapy,” you say, “We need a behaviorist.”

So we climbed giant mountains of paperwork, hacked our way through forests of red tape, and crossed echoing canyons of ambiguity. Finally – a glimmer of hope! A lengthy evaluation process for one government agency yielded a small grant for 10 hours of behavioral therapy.

We celebrated! “10 hours a week! Woo hoo!”

Um, no. Just 10 hours. Period.

The therapist’s behavioral assessment alone took all of our 10 hours. When we requested another grant for the therapist to actually implement the behavior plan, our friendly dragon at the agency simply shrugged and gestured to the empty treasure chamber behind him. There were no funds left to give.

We applied for a medical waiver for children with special needs but were placed on a waiting list. Yet another agency deflected our request for an application by sending us back to the Healthcare Advocate.

At this point you might assume we would be angry at these government agency dragons for making it so difficult to access funds that our son so desperately needed. But it’s important to remember that with only so much money available, their task is to ensure that children with the most need are served first.

And, honestly, but for an unfortunate loophole, it would not have been necessary for us to approach these dragons in the first place. Our difficulties on this journey would be fewer, our path, easier. Our son would have the therapy he needs.

But fear not! My husband and I are not ones to shy from challenges. Even as I write this, we are applying for grants and filling out paperwork for other agencies, preparing for the next awaiting dragon.

You know, the more time I spend here in my alternate universe, the more I realize the truth of John Barth’s quote: “Everyone is necessarily the hero of his own life story.”

So – A Memoir? Why not?!

My quest to write about what makes other people tick has, instead, become a journey of self-discovery. Maybe that’s what I was really looking for way back at that writers’ workshop: To not just write about a journey… but to journey; to not just write about connections… but to connect; to search for meaning and insights, and share what I learn in hopes that I may, in some small way, impact the lives of others.

“We have not even to risk the adventure alone, for the heroes of all time have gone before us… And where we had thought to travel outward, we shall come to the center of our own existence. And where we had thought to be alone, we shall be with all the world.” – Joseph Campbell, “The Power of Myth”

Back in my more adventurous days, I traveled to New Zealand with a teacher friend over summer vacation. The first Lord of the Rings movie had been released six months earlier, and I just HAD to see this beautiful country for myself. I was not disappointed! New Zealand is just as magical and breathtaking in person as in the movie, but far safer, as it is freer from goblins, orcs, and trolls than the movie implies.

One thing that I wanted to try while I was there was bungy jumping. If ever I was to bungy jump, Queenstown, the “Adventure Capital of New Zealand” was the place to do it. According to the guidebooks, New Zealand took adventure-sport safety VERY seriously and I, being of a nervous disposition, liked the sound of that.

On that chilly, July morning, my friend and I arrived at the Kawarau River Bridge just outside of Queenstown. I was strangely set in my decision to jump, but I still asked plenty of questions to satisfy my anxious, practical side. The people at AJ Hackett Bungy were used to nerves, and Alex, the bungy jump guy, (not his real name) answered all my questions and quoted their safety records as further proof that they knew what they were doing. He weighed me and asked if I wanted a “regular jump” or a “splash down” where your head goes into the water at the bottom. Holy crap, “regular jump”, please! Then he showed me how he calculated the correct amount of bungy cord based on my weigh. Math – very reassuring!

We walked out to the bridge that spanned a gorge through which a turquoise blue river snaked around corners and out of sight in both directions. The view was spectacular, and between that, the crisp, winter air, and the thought of what I was about to do, I had never felt so alive as that moment.

And “alive” is a pretty great thing to be! So what the hell was I doing jumping off a bridge in a country halfway around the world?!

I took a deep breath and continued to follow Alex. He led me to an area near the edge of the bridge that had a platform sticking out over the water. I commented (several times) that the rocks below looked very close and was he SURE I wouldn’t hit them? Even if I were to swing a little too far to the left? And he was positive that no one had ever hit those rocks before? You know…because they looked REALLY close.

Alex just kept smiling and promising that I would definitely not hit the rocks or the side of the gorge or anything else because he had done the math, and checked the ropes, and secured all the equipment, including a safety harness around my waist, and I would be fine.

I noticed that he was wrapping the cord around my ankles. “What if my hiking boots come off?”

With both ankles tied together, Alex helped me shuffle to the edge of the platform. As I got to the end, my heart was pounding and my knees were shaking. He told me to look out at the mountains in the distance, and when he counted down to zero I should dive straight out towards them, not down. I looked at the mountains, and he counted down in an enthusiastic “I-love-adrenaline-and-this-is-so-awesome” voice. “5…4…3…2…1…”

And I jumped.

The feeling was unreal those first few seconds. My eyes were closed tight. I was in total scary darkness, my body plummeting toward the rushing water below. When the bungy finally caught me and I went shooting back up in the air, I was hooting and hollering, not just because it was fun but because I was so frickin’ happy to be alive. “Waaaahoooo!” (Thank God, I survived, and the cord didn’t break, and Alex is super-good at math, and I didn’t hit those rocks over there!) “Yeeeaaaaah!”

Proud and exhilarated, I bounced several more times and then dangled upside-down rather unceremoniously while I waited for a boat to come and rescue me.

In so many ways, our son’s diagnosis of autism was like leaping off a bridge into the unknown. We spent a lot of time waiting and looking over the edge. There was no way in hell we were jumping until the experts arrived to help us.

Three months after our son’s initial testing by Birth-to-Three, he was tested again by the Autism Specific team. As we expected, he was given an “educational diagnosis” of autism. This diagnosis would qualify him for educational services, but it was not an actual medical diagnosis. We asked plenty of questions, but there weren’t many definite answers they could give us. There was no way to know when or if he would speak. There was no way to tell at this point how mild or severe his autism might be. There was no way to predict what types of therapies might work or not work. What they did know was that “early intervention” was the key in improving our son’s prognosis.

OK. So far there was no way of knowing how far the drop was, how much rope was needed, or if there were rocks below. This leap was going to be a bit scarier than I thought! At least we knew “early intervention” was the jumping off point.

When I thought of “early intervention”, I imagined therapists coming to our house several hours a day, five days a week, working intensively with our boy doing whatever it is that therapists do, and performing some “early intervention” magic on our son, who would then make miraculous and speedy progress – like a cavalry of autism experts riding in, tipping their hats, and saying, “Not to worry, folks. We’ll take it from here.”

The type of program we received was actually more of a “parent-training” model. An early childhood educator DID come to the house to work with our son, but the goal was to teach ME about autism and intervention strategies that I could use everyday to help him.

This sounds good in theory, but I felt completely overwhelmed. It was as if I had arrived to bungy jump only to have them say they would show me how to calculate the correct rope length, how to set up the safety gear, and how to attach the rope to my ankles, but I would be expected to do all those things myself before leaping from the bridge. Standing on that ledge, I couldn’t help but think that some things are best left to the professionals.

Five days a week a person from the early intervention team would come out for an hour, teach me techniques for working with my son, answer questions, and try to troubleshoot solutions for problems. They were all wonderful, knowledgeable, and caring people, and I tried my best to follow their instructions. But working with my son was not easy. I struggled to get his attention and keep him focused on an activity. It was difficult to slow his constant movement and calm his body long enough to play with a toy or do an activity, my hand guiding his. He would fuss, and scream, and try to get away; I would feel defeated.

As the parent at home, it fell on my shoulders to do most of this therapy. Months went by with no improvement in my son, and the guilt began to weigh heavily in my chest. Soon my anxiety took over, and I felt absolutely paralyzed. I would watch him running back and forth, back and forth, transfixed in his activity, lost in his own world, and my mind would go blank. I felt helpless. Early intervention was the key to a better outlook for my little boy, and precious time was slipping away.

Back and forth he ran, like the swinging of a clock pendulum.

What was wrong with me? All my life I met challenges and difficulties head on. Why was it so difficult for me to find the courage to be my son’s therapist?

As his mom, I just wanted to love him, care for him, and keep him safe, healthy and happy. But I was also supposed to “fix” his autism, and I was failing. I was failing my son, and the pain was almost unbearable.

I had become close with one of our early intervention therapists, and she suggested that I attend a support group for parents of children with special needs. I actually started going to several support groups, some weekly, some monthly. Every meeting I went to I met new moms, learned about strategies and therapies that might work, and got names of specialists and doctors who could help. Sometimes I met a mom only once, and other moms became good friends, but they were all amazingly strong ladies – their strength gave me courage.

It turns out that the “experts” my husband and I had been waiting for on that bridge were moms just like me, moms of children with special needs who had already been in my position before. Some helped us put on our safety gear and warned us about the rocks and obstacles we should avoid below. Others told us how to find experts who could calculate the rope length we might need. We learned that it was good to hope for a “regular jump”, but it was also important to prepare for the possibility of a “splash down” because you never know the future might hold.

5…4…3…2…1…

This jump has been a lot more terrifying than the last one. We’re flying through the air, waiting for the moment when the cord will catch – that’s when we’ll know everything will be OK. When that happens, you can bet there will be lots of hooting and hollering and celebrating. And then I’ll head back up to help the next mom.

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Jen Rosado originally hails from a parallel universe in which she was first a lab tech, then an elementary school teacher. She spent her free time swing dancing, running, reading, and carefully planning ahead in a desperate attempt to avoid anxiety-provoking situations.
Due to a twist of fate (or perhaps a cosmic conspiracy), Jen now resides in this universe with her husband and son and spends her days in anxiety-provoking situations. She aspires to be a professional writer with a wildly successful book that will hopefully earn her rave reviews, adoring fans, and enough money to pay down her credit card debt (as this universe is vastly more expensive than her previous one). If she has a spare moment, Jen enjoys sleeping, writing, procrastinating, and pondering deeply the meaning of life.
This blog is a collection of stories, musings, and observations about life, parenting, anxiety, autism, and whatever else the future may hold in this strange, unsettling, and enlightening universe.
This is NOT a blog about Quantum Physics.